When Reality Hits

For as long as I’ve spent in therapy (thousands of hours at this point), I can count on my fingers the number of difficult sessions I’ve had.

It’s not that my sessions don’t involve difficult topics. While most of my early therapy experiences focused on tackling surface issues unrelated to trauma, the last nearly three years have been all about my trauma. Even then, I found myself able to detach from emotions a lot of the time.

Just a week before this latest session, I told my therapist about an incident from my teenage years. I was triggered a few days prior when the dog had split her nail and bled on the carpet. It almost instantaneously led to a flashback from when I was stabbed in the abdomen and left the same marks. When it happened, I was lost in all the same emotions. I felt like it was happening all over again. But when I told my therapist about it, I was void of emotion. I didn’t cry. I didn’t feel anything.

I thought I could do the same thing in our next session. Don’t cry. Don’t feel. Just get it all over with. Instead I cried, and I felt more than I ever wanted to feel. I was unprepared for that.

My therapist was concerned. And I knew it wasn’t just her concern. It was the treatment team’s concern. And as much I tried to deny it, it was my concern, too. My symptoms were getting worse. Not only in the last week, but in the last few months. I had been getting increasingly lethargic. No matter how well I sleep, I’m exhausted. Some days, I can barely climb the stairs without feeling like my heart is going to explode. My legs and feet swell, the right side worse than the left. Some days, it feels like I’m dragging 100-pound weights on each leg. Just moving around puts my heart into overdrive. Several times I found myself leaving group because of chest pains.

It was other things, too. Signs of heart failure. I knew it all too well. I watched my father go through it. I didn’t want to watch myself go through it.

I couldn’t avoid it any longer. If you don’t make an appointment with your cardiologist by tomorrow morning, you cannot return to program. An ultimatum with no option for negotiation. A crisis I could no longer avoid.

This session was different. My therapist wasn’t softening reality at all. She wasn’t letting me get away with avoiding the pertinent shit in my life. Not this time.

You know what, yes, you likely do have heart failure. Not going to the doctor isn’t going to change that. She was right. But there’s a difference to me, in suspecting something to be true and then actually having it confirmed. The latter is unchangeable. At least with not knowing for sure, there is just enough room for a small possibility of change, a small chance of it not being true.

Yes, you’re going to be sick for the rest of your life. And I will never understand how that feels, how you feel. It’s frustrating. It makes me angry, for many reasons. I’ll never know what it’s like to feel normal, to not be sick, for just one day. But my mother knows that. She’s not suffering. She’s living longer than I will likely live, more healthy than I have ever been and will ever be. Where is the fairness in that? I lost the genetic lottery big time.

But it can be treated. Yes. Just like my emphysema is treated. Treated, but not cured. Another diagnosis to be added to the list. Another health issue I didn’t need in my 30s. Another illness I don’t deserve.

Is it just about not wanting the diagnosis, or is it more than that? Is it another indirect way to be suicidal? It’s like she knows me. The same reasons why I still smoke with emphysema. It kills me faster, and no one really sees it as a slow suicide; they just see it as being stupid. The longer my heart goes untreated, the sooner I’ll die. Why prolong a life that’s destined to be minimal?

I didn’t tell her that, of course. I told her it was just about the diagnosis. I thought that would put a stop to the difficult conversation, but she just shifted to something even more difficult: the purpose of my life.

You may very well never be able to work again. You may not be able to get through all the schooling you want to. She was direct, in a way she had never been before. We’ve always thrown around the idea that I could eventually start working again, that my heart condition would get better and I could be normal again. But that didn’t seem like a realistic option anymore, at least not in the sense that I wanted to be normal. As far as school goes, I missed the deadline for my doctorate application because I was inpatient when the application was due. So any plans I had for getting my doctorate next year went out the window. And maybe that was meant to be, since I can barely get through the last few courses I have for my masters. Not for lack of knowledge, but for lack of energy.

But maybe you were meant for something different. Maybe you can’t be a therapist, or go into research. But maybe you can help others in a different way. She read the letter I wrote to the hospital. Another example of my never-ending drive to correct wrongs. I told her about the director’s response, how they were going to look into how they can change. See, think about the people you’ve helped just by doing this. You may likely cause this hospital system to change their ways.

I knew she was right, but it still didn’t seem like enough. I needed more. Maybe you can start an organization. I told her I already did. I told her what my dream was for PAFPAC, what I wanted to do when I first started it. But then my health (mental and physical) took a turn and I haven’t had the energy to make it what I wanted it to be. You’re still helping people.

But not as many as I wanted. I admitted to her that my life goal was an impossible one, and that’s where I’ve gone wrong. I wanted to stop mothers from abusing their children; I wanted to prevent people from hurting. And I know, logically, that will never happen.

You can still affect change. You’ve already started. Your actions help people. Your writing helps people. You give a voice to those who can’t speak. You’re going to have really bad days. That’s inevitable. But some days, some days are going to be okay. And it’s those days that you can really be you.

The dreams I had when I first ran away are now gone. My hopes of being a professional, of living a long life, of helping the world, are just not possible. The universe has given me this life of constant struggles. It has taken away too much from me. I’m just not sure if what I am left with is enough for me.

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I’m a Liability

Do you understand the consequences of your condition? You cannot be out by yourself. Do you understand? You can be walking down the street, pass out, get hit by a bus, and die. You can pass out and stop breathing, and the lack of oxygen will cause you to be brain-dead. This is serious. I need you to verify that you understand the risk you’re taking.

I laid in my hospital bed, listening as the doctor in charge continued on her lecture. I laughed to myself. There were so many things I wanted to say, half in sarcasm, half in truth, but I knew saying them out loud would likely end up with me being put on a psych hold. I repeated her words back to her. My voice lacked the care and concern that hers did. This wasn’t anything new for me. This was my normal.

I didn’t wake up that Tuesday morning expecting to end up in a hospital bed later that night. It was a regular day. I woke up, took a shower, unloaded the dishwasher, and put a load of laundry on before heading to work. It was a slow day to start. I walked home on my lunch break to let the dogs out and take some cough medicine, as I hadn’t been feeling well since the night before. I walked back to work and planned to finish out the next couple of hours with no problems.

But it didn’t quite happen that way. I knew something wasn’t right. I was walking down the aisle and I could feel my heart racing and stopping, racing and stopping. I kept telling myself in my head please, not here. I was barely two weeks into the job. I didn’t want to pass out there. I hadn’t even informed anyone of my heart condition until a week after I started the job, and it was only because my therapist thought it was necessary. None of my coworkers knew; only the manager. I didn’t want anyone to know because I didn’t want people to overreact. I didn’t want anyone to treat me differently. I just wanted to be normal.

Time had passed and I could still sense something was wrong. I couldn’t breathe. At one point, I could barely speak. I motioned to the assistant to take care of a customer for me, and I must have looked off because she ran to get me a chair. I just wanted to be okay. This is going to pass. This needs to pass. I sat down, hoping that would help. I tried to breathe, which was harder than normal because I had also been sick.

I don’t know how long I was sitting for, but I ended up falling over onto the floor. I looked up to find my coworker kneeling at my side, another was on the phone with 911. I’m okay, I just need a minute. Why did they have to call 911? I don’t need help. I’m fine.

But people still don’t believe me when I say I’m fine. The paramedics ended up taking me to the nearest hospital. I gave them my history, told them I had the internal heart monitor. They couldn’t get any information from the monitor because I didn’t have my ID card on me, and it wasn’t the same hospital where my surgery was done. So all they could do was run tests.

EKG was normal, x-ray showed an enlarged heart with inflammation in the lungs. They started me on IV steroids and breathing treatments. I thought the focus had shifted from passing out to not being able to breathe. After a couple of hours, the heart monitor was off and the breathing treatments stopped. A doctor came in to tell me I had been admitted, and I immediately starting panicking. Why? All I’m doing is sitting up in bed, unattached to anything but a Pulsox on my finger.

You passed out. Well yea, I pass out a lot. I still wore the bruise on my forehead from two days earlier, when I passed out and hit my head on the tiles of my bathroom floor. This was just my life now. Pass out, get up, move on. I’ve been doing it for years now, though not nearly as frequently as the last few months. It became just another part of my life to cope with.

I didn’t want to be admitted so they could watch me all night. I could do that myself, at home, free from the PTSD reactions that hospital admissions continue to cause me. I called J in tears, begging her to come pick me up. She knows I don’t like hospitals, but also knows that sometimes I have to be there. And I know that, too. But this wasn’t necessary. I didn’t need to stop my life just so they could make sure I didn’t pass out again.

So that’s why I got that lecture. I told them I did not want to be there. I told them it was difficult for me emotionally. I wanted J to be there to help me make sure I was making the right decision, because I admit I’m not so good at that most times. But she agreed, too. They weren’t doing anything to help me. She told them the same thing I had told them — this is what we’ve been dealing with for months now, and we just deal with it until we know more.

I signed the paper and I left. The risks weren’t new to me. They were the risks I had been taking every day. And I would continue to take them.

Except that not everyone wants to take those risks with you. The next morning, my manager sent me a text. She had already taken me off the schedule for the rest of the week and next. She asked me to turn in my keys. I needed a note before I could return back to work. A note I knew I wasn’t going to be able to get. I was now a liability.

I get it. They can’t have employees passing out. It was a fear I had myself, knowing that there were times I was going to be alone in the store. I get the liability.

But now I am stuck. No one wants to employ anyone who’s going to pass out at random. My disability was denied. I’m not making any money. I’ve spent the last week in and out of hospitals not just because I passed out that one time, but because my COPD is so out of control, in combination with my messed up heart, that no doctor wants to treat me.

I went to urgent care on Thursday hoping to get a prescription for steroids before my breathing went to absolute shit, and I ended up being sent to the hospital again. He told me he didn’t feel comfortable treating me. It wasn’t just the breathing. It was my heart. My heart rate was low — way too low for normal, and especially low considering it should have been higher to compensate for the extra work it needed to do to help me breathe. Something wasn’t right, and as soon as he heard I had a heart condition, I became a liability.

I feel stuck in a situation with no happy ending. No matter what I do, I am a liability.

After all, I can walk down the street, get hit by a bus, and die, right?

But so can anybody. So why do I have to be treated so differently?

 

 

You’re so young

But you’re so young.

I heard that exact phrase at least two dozen times over the last two weeks.

It wasn’t the first time I heard it. I’m sure as hell it won’t be the last. But hearing it over and over and over again day in and day out made me want to scream out loud. I didn’t, of course. I only screamed on the inside.

I know that the people saying it weren’t saying it to be negative, but they didn’t realize that every time I heard that phrase, it was like a tiny jab to my already damaged heart. I know I’m young. You don’t need to remind me. I know I’m sick. You really don’t need to remind me.

I can’t blame them, though. I’m 31 years-old with a disease that affects the elderly. They see my COPD diagnosis and they don’t understand it. And then they want to ask questions. How much did you smoke? How long were you a smoker? I can never seem to tell them I only started smoking after I got sick. I can never explain to them how I grew up and lived in a (literal) toxic environment, how I spent most of the last 17 years in and out of hospitals. It wasn’t just the cigarettes that gave me COPD. It was my life.

It’s hard for many people to realize just how much trauma affects the body. I see it all the time. I’ve never met a person with PTSD who wasn’t struggling with at least one type of physical problem. The effects of trauma aren’t just on the mind.

My body started giving up long ago. It wasn’t just about the broken bones, the bruises, the damage it withstood on a regular basis. Every last bit of energy is spent trying to survive. After awhile, the body can’t fight anymore. There’s no way to win the war. So things break down in ways they shouldn’t, way earlier than they should. Broken mind, broken body.

But most people don’t understand the connection. They don’t want to hear about the trauma, about the battle you endured that brought you to this point. They want hard facts spoken in brevity.

I don’t bother with facts. I don’t bother with the truth. Just bad luck, I guess. That’s what I tell them. As if luck has been the one and only cause of my destruction. Luck took away the cartilage in my knee. Luck caused me to get COPD. And now luck has led me to a heart problem that has yet to be solved.

Fuck luck. Fuck genetics. I want people to realize the connection to trauma. I want them to stop telling me I’m so young, and start asking how I really ended up here. I want somebody to stand up and realize that I am breaking, not because of luck, not because of genetics, and not all because of my own doing. There was and is something more here.

I want to be able to tell them the truth. My heart is weak because it’s tired. Thirty one years of my life has been constant stress and fear. I’m surprised it still beats at all, to be honest. Why hasn’t it given up on me yet? Why does it try to quit and then get knocked back into beating?

And just when I thought it was over, the appointment was done, the surgery was done, the questions were done — it happened again.

The manager of cardiac unit called me the following day to check and see how I was doing post-surgery. I told her everything was okay (except for some mild pain), and then there was an awkward silence. Then I heard her again. Do you mind if I ask?  You’re so young, why did you have this done? We’ve only ever had to do this with older patients.

I really wanted to say wait, you mean not every 30-something has a heart monitor implanted into their chest? Instead I told her the basic passed out a few times, they found an arrhythmia, completely downplaying the fact that I passed out way more than a few times and I had a collection of issues that included more than just an arrhythmia.

She’s right. All these people are right. I am too goddamn young to be dealing with this shit.

But I am dealing. I am living life as if nothing is wrong. Because that’s how I learned to live.

And that’s what got me here.

Changes, Part 2

I wish I could say I knew what was going on with my health. Since I last wrote, things have only gotten worse, and answers are very few and far between.

My tests revealed a stenosis in my left shoulder. It was enough to explain some of my symptoms, but not all of them. It didn’t explain the passing out or the dizziness. It may have explained the difference in blood pressure, but aside from that, something else was going on, but no one knew what.

As I sat in his office, I started to feel it again. The feeling I have trouble explaining. It starts as a tightness in my chest. My head gets heavy and I start to get dizzy. It feels like a grand effort just to keep upright. I remember him telling me I didn’t look right. He asked me if I was on anything (insinuating drugs, which I don’t blame him for, because he does know my history). I couldn’t tell him what was going on. I just told him I was tired. I told him I’d be okay. If I had just been able to tell him in that very moment what was going on, maybe he could have helped me better, because what has followed since then has been a series of concerning and frightening events.

I couldn’t tell you the exact date, though I could look through the growing pile of hospital papers I have acquired in the last several weeks alone because of this. I was sitting in group at PHP. I felt the pain in my chest. I tried to focus on breathing, but the pain wouldn’t go away. My heart was fluttering. My head felt weird. Dizzy, empty, full, I can’t describe it. I remember sitting in the chair after group unable to move. A few people walked by and asked if I was okay, but I couldn’t answer. My body was so weak, I could barely speak. I remember the therapist sitting in front of me asking if I was okay. The next thing I remember, I was flat on my back on the floor confused as fuck.

Apparently I had passed out cold right out of the chair and onto the floor. All I could do was apologize. The therapist was there, the nurse, and the psychiatrist. They checked my blood pressure and pulse, and both were way too high. Not my normal at all. It felt like my heart was going to beat out of my chest. I tried to calm down but all I could was panic. I kept telling them I was fine, but they had called 911 and I ended up being rushed to the emergency room.

I remember the paramedic checking my blood pressure in the ambulance and it came up extremely low; 60/40. He asked if I felt okay. I told him I’m fine, I’m just tired. My usual response, you know. He figured it was just a bad read. He didn’t know any better. He didn’t know all the times my blood pressure readings were so extreme the nurses and the paramedics just assumed they were “bad reads”.

The hospital did blood tests, a CT scan, x-ray. It wasn’t a heart attack. But they couldn’t give me any answers. They listed it as dehydration, and told me to drink more and make sure I was eating enough. I could give them that. I probably wasn’t eating enough.

So I made an effort to eat more. I ate a granola bar for breakfast. I bought a snack for between group sessions at PHP. I hoped this all would stop if I just ate more.

But it didn’t stop. I got that feeling again. The chest pain, the weird feeling in my head.  I sat in the nurse’s office in fear that I was going to pass out. She checked for a pulse and could barely feel it. She checked the other side and noticed an irregularity. Not only was my pulse slow, but my heart was skipping a beat. She felt it again and it was still the same. The total opposite of what it was when I passed out before. Instead of my heart racing, now it was barely beating at all. They called 911, and I ended up in the hospital once again.

This time was no different. My blood tests were fine. No heart attack. I stayed bradycardic, but otherwise they weren’t concerned enough to keep me there over night. I was discharged once again with no real answers.

I think the nurse and psychiatrist at PHP were as frustrated as I was. The nurse asked if I could have the hospitals send copies of my EKGs sent to them, so I called up both hospitals I was in and they quickly faxed them over. The psychiatrist noticed something in both EKGs that no doctor or hospital every told me. There was an irregularity in both EKGs, which no one ever addressed and everyone seemed to ignore.

And as if twice weren’t enough, it happened a third time. I was within group and got the pain in my chest. I tried to stay calm and sit through group, but it became increasingly difficult to focus. The woman sitting next to me asked if I was okay, because she said I did not look good. I said I was fine. I didn’t want to go through this again. I just wanted it to go away. But it didn’t. I hesitantly got up to go and ride it out in the bathroom, hoping the pain and dizziness would pass. The nurse saw me on my way there and she knew just by looking at me that it was happening again. I told her I was fine, but I don’t think she believed me, because when I made it out of the bathroom (still no better than before), she and the psychiatrist made me sit down and she took my pulse and blood pressure.

And there it was again. I had a weak pulse, and my heart would skip beats, just like before. I told her I was fine. She kept asking if I was having chest pain and I didn’t want to answer, because I knew if I said yes, she would call 911. The psychiatrist called my cardiologist (who happened to be on call at the hospital) and talked to him directly. He told me to come straight in. Another hospital visit, just days after the one before.

This time wasn’t quite the same story. The doctor came in and told me I had an arrhythmia. He explained that something was off in the part of my heart that controls how it beats, but they just weren’t sure exactly what the problem was yet. They were checking for AFib and put me on a 24-hour monitor right away. Finally, here was an answer. Not a full answer, but certainly better than dehydration.

But it wasn’t a cure. I was still passing out. One morning on my way to work, I passed out as I was closing the front door to the house and fell down stairs of the front porch, sliding down until I hit my head on the concrete. I woke up after 10 or so minutes, I don’t even know. My only worry was getting to work on time. With a scraped up head and bruised up legs, I managed to make it to work on time. I told myself I was okay. I said everything was fine. But it wasn’t fine. My head was pounding, my eye was swollen, and I apparently couldn’t say a coherent sentence without slurring my words. My supervisor was worried I had a concussion so he sent me home. All I could say was I was sorry.

That wasn’t the last time I passed out. Last weekend, I collapsed on the front porch during a retreat for my support group. They called 911, but I refused to go to the hospital. I’m sure the paramedics weren’t happy with me. I told them my list of problems: a stenosis in my left shoulder, heart arrhythymia, tachy/brady, irregular blood pressure, COPD. I told them I’ve been through it enough to know I’d be okay. The hospital wouldn’t do anything for me anyway but have me rest.

I’ve passed out at home (that time, at least, on a carpeted floor). I’ve come close to passing out in work, at stores, even walking across the street. It’s gotten to a point that I’m afraid to go anywhere because I don’t know when I’m going to pass out, and I don’t want to be alone if and when it does happen. Almost every day now, I get the pain. It’s unpredictable. I sit, I lay down, I try to relax. Sometimes it passes quickly. Sometimes it passes after an hour. And sometimes I pass out. It’s a lottery, and I never really know what result I’m going to get.

It’s frustrating not knowing any answers. I fear that in some way, I will end up like my father (who had heart disease which eventually killed him). I don’t have diabetes, I don’t have high cholesterol, I don’t have high blood pressure. Yet somehow, I ended up like this.

I spend my life sitting in waiting for that feeling to happen again. It feels like your body is fighting against you, like your heart wants to quit (literally), yet something kicks in and makes it start going again.

How symbolic.

Saved

I passed out last Saturday.

I was in the shower about to condition my hair when I noticed my vision getting blurry. I couldn’t even make out the bottles. I felt weird, and very off-balance. It was similar to how I felt two years before, when I ended up passing out in the hospital. I had just enough reaction time to open the shower curtain and lean on the toilet so I didn’t fall down.

It scared me. I hadn’t passed out like that in two years. And I was alone with the door locked. What would have happened if I fell and got injured? No one could have helped me. It could have been a lot worse than it was.

Since then, I’ve been taking breaks every morning when I shower. I’ll stand for a few minutes, then step out and sit for a few minutes before getting back in. I thought I could just deal with it. But I still didn’t feel right. I was still feeling light-headed, even at random times throughout the day.

We are supposed to report any side effects or events like that to the nurse at the program. But I hesitated for a few days, because I was afraid it would mean I had to stop taking the medication I was taking for the PTSD (it is primarily a blood pressure medication). I finally decided on Wednesday to tell the nurse what had happened. I hadn’t been feeling well that morning and I was scared again.

I told her exactly what I remembered. She asked a few questions and had me sit down to take my blood pressure. Then I saw the confusion and concern on her face. Something’s not right here. My blood pressure was reading exceptionally high — the exact opposite of what she was expecting, since my symptoms all pointed towards low blood pressure. She took it again and ended up with the same result.

At this point, I think we were both a little concerned. Something made her check my other arm. This is so bizarre. I asked her what was wrong. My blood pressure was reading very low. Two different arms with two drastically different blood pressures. She had never seen it before. She wrote down the results, asked me a few more questions about different symptoms and went to consult with the psychiatrist.

When I checked back in with the nurse, she told me the doctor said to stop taking the Cardura right away and see a cardiologist ASAP. This wasn’t normal at all.

I was scared and a bit of an emotional mess. I couldn’t focus on much of anything at that point. I just wanted to pretend like this never happened. Let’s just go on like we never found this out. But I knew I couldn’t do that, and the nurse didn’t want me to do that, either. So I called the cardiologist, explained the situation, and got an appointment for the next day.

Even though part of me wanted to flee that appointment, I went. I also knew I needed to go because the people at program were concerned about me, and insisted that this was important.

They were right. It was important, and my issues weren’t normal. I need further tests, but the cardiologist thinks it is an arterial stenosis, or blockage in one of the arteries on my left side. I need to have a CAT scan and ultrasound to confirm exactly where the blockage is before we can do anything further. The cardiologist also wants me to see a neurologist to rule out seizures, because he says my pass out events are not typical of heart-related fainting.

And now I have to sit and wait. Wait for insurance to approve the tests. Wait for a diagnosis. Wait for more answers.

I don’t want to wait. I don’t even want to deal with this right now. I just…I don’t even know what is happening to me. I am falling apart in more ways than one. And I don’t understand why all of this is happening. What did I do wrong?

My emotions are in all the wrong places. I have been crying off and on and I’m not even sure why. I eat, I cry. I sit down, I cry. I go pee, I cry. I’m a mess.

I was angry at myself for causing this. Maybe if I had just gone to the doctor all these years like a normal person. Maybe if I didn’t smoke. Maybe if I just took better care of myself, I wouldn’t be in this moment right now, dealing with a serious medical issue.

I was angry at the nurse for finding something off and sending me to the cardiologist. If she didn’t check my other arm, this would have never happened. Like it was her fault for all of this. I know it wasn’t her fault at all. And I felt incredibly ashamed for feeling anger towards her in the first place.

The nurse checked my blood pressure today. Part of me hoped that other day was just one big mistake, that the machine was just acting up. But it wasn’t, and once again, there was a drastic difference between each side. I wanted to cry. The nurse was trying to be encouraging, just as she has been these past two months as I’ve continued to struggle with my declining health.

I told her about my feelings towards her, and the misdirected anger. I felt the need to apologize for my feelings that she would have never even known about if I hadn’t told her. She didn’t take it personally. She said a few things, and then she ended with and I may have saved your life.

And she’s right. But I still struggle with whether or not my life is even worth saving anymore.